NHS Forth Valley axe autism assessment team with almost 900 on waiting list

Cat Thomson has been on the waiting list for an autism diagnosis for almost two years.

“I experience burn out on a regular basis,” they said. “Just from having to appear normal all day – that’s what autistic people often call masking.

“The big thing for me is sensory issues, things like textures, sounds or smells – all of those are extremely heightened.”

As a student, living with the symptoms of autism left Cat facing added challenges while preparing for exams and coursework.

However, Cat’s wait for an NHS diagnosis, which would open up access to further support, is now set to continue after NHS Forth Valley made the decision to axe the Adult Autism Assessment Team (AAAT).

Cat struggles with their studies due to autism symptoms STV News

Those currently on the waiting list to be assessed for autism were sent letters revealing they would no longer be seen and that the service would not be accepting any new referrals.

“I immediately threw the letter down,” said Cat. “I was just filled with a mixture of frustration, anger, disappointment, upset. I had to take a long time to process it.

“After I’d calmed down, my head went immediately to my friends who are in the same position as me, some who had been waiting longer than me, who have been fighting for tooth and nail to get through on that waiting list in the first place.”

The health board said the unit, run by a small team of staff, had experienced “very high levels of demand and increasing numbers of referrals” in recent years.

It was developed in 2019 to help ease demand on primary care and respond to a growing demand for neurodevelopmental assessments.

When two staff members left, the health board took the decision that “trying to recruit two part-time staff to run the service in the same way as before may not be the best or most effective use of the resources available.”

Almost 900 people in the region faced waits, some of up to six years, for an assessment on the service.

In search of further support, Cat joined members of the Neuroclacks, an autism support group in Clackmannanshire, where members discussed the ramifications of the AAAT closure.

Chairwoman Amelia Connolly said: “I was horrified because I was shocked that they could end such a vital service.

“You need adjustments to do anything in life, your school, your university, your college, or in your workplace.

Amelia Connolly, chairwoman of Neuroclacks STV News

“A lot of autistic people and people with other neurodiversities like ADHD need these adjustments to thrive.”

“I was really angry,” added group founder Hannah Coyle. “I was heartbroken actually. It’s a vital service in the area and so many people rely on it.

“We’re still in times where the way that people see autism isn’t where we would like it to be.

“We would like people to understand that while it’s a disability it’s also a difference and while it comes with struggles it comes with a number of strengths as well.”

Ethan Richardson, the group secretary, added: “We have many members here who need a diagnosis to help with day-to-day life and work.

Ethan Richardson attends the Neuroclacks support group STV News

“The waiting list was so long that to hear of the closure is just very disappointing.”

Over 3500 people have now signed a petition calling for the service to be reinstated.

Trade Union UNISON has also criticised the health boards actions.

David O’Connor, regional organiser, told STV News: “Staff have been outraged at how this has been done because the service was created to alleviate pressure on existing services and what they’ve done is just reintroduce that pressure.”

In a statement to STV News, Joanna MacDonald, interim chief officer of Clackmannanshire & Stirling Health and Social Care Partnership, said: “Like similar services in other parts of the country, the Forth Valley Adult Autism Assessment Team (AAAT) has experienced very high levels of demand and increasing numbers of referrals which resulted in very long waits.

“The Team was run by two part-time clinical staff who both recently left, which meant that it was no longer possible to accept new referrals or see people who had already been referred.

“As the number of people referred to the AAAT was far greater than the small team was able to see, it was recognised that trying to recruit two part-time staff to run the service in the same way as before may not be the best or most effective use of the resources available.

“This decision is not a result of a budget cut but is driven by the need to ensure the most efficient use of resources in meeting the demand for services.

“However, we are committed to working with local people, GPs, and partner organisations over the next few months to identify the best way of providing services and support for people with Autism going forward.

“In the meantime, we have contacted people who had previously been referred to the AAAT to provide details of alternative sources of support and advice and to highlight that, under the Equality Act, they are entitled to access help and support at work or educational settings without a formal diagnosis of autism.”